[eveParticipant]

Hi Jean
Yes Scrabble still on,I have 5 games on the go at the moment,I was doing so well against you,then you snuck up on me. lol

How are things with you,,4,5,6.Cycle is hard,just keep an eye out on blood pressure if it goes down,there is something amiss,so easy to miss an infection with steroids.

Will not be long before remission and then SCT,all new learning curves,So both of you hang in there,and if your worried,do not hesitate to contact us.

Are you going to the Belfast info day.???? Eve

[eveParticipant]

Hi Gill

May I say you should be very proud of your self,because you not only gave Stephen a good send off,but you did it in style,

I have enjoyed reading your post,I did not cry but smiled and laughed,I can only say,it was like hearing you talking about Slim,even to Rod Stewart. If there is another life,you can bet he will be looking down on you and laughing.

Open those doors that are in front of you,but be slow to shut the once behind you,we will be there if you need us Gill. Love Eve

[eveParticipant]

Hi Tina
Well that is good news,it means by Christmas you will be home and recovering,have to get your christmas presents before you go in.

Slim was sorry he did not take a mug for tea in with him,so if you have a favourite,I would take it in.It will be over in no time,ask any questions you want about the SCT more advice you get helps you to understand it better.

Good Luck.Eve

[eveParticipant]

Hi Mary

Well everyone is saying the same you will get over this hurdle,as for felting the garden shedddddddddddd,he is going to have to slow down a bit.:-P

Mary I never take pills,but at one stage I found my self tearing a piece of a complete stranger,so that little white pill keeps my emotions under control,nothing worst than crying or behaving like a mad woman,when thing use to get me down just took them for a few days at a time,doctor said thats not how they work,but it worked for me. psychological I know.:-S

You will find an inner strength,and as time goes on knowledge will become you ally ,so things will not seem so frightening. Love Eve

[eveParticipant]

Hi David
IF you can get a PET scan out of them,it will show any form of Cancer outside of the bones,but they cost a lot of money.
I do not know how they will decide if Slims is coming back as they have told us only way is BMB.
Have another holiday ,then you might forget about the 3 months again.Eve.
Dai is very quiet anybody know if he is OK?????

[eveParticipant]

Hi Mary

Sorry to hear about Stan,Slim was about 4 cycles on CDT,when he was rushed into hospital with septic pneumonia ,9days ITU 22 all together in hospital a weeks rest then back to next cycle tough but doable.Lot of damage to lungs holes and mass blood clots,only to be told at end of 6 cycle it had not worked and his condition was worse,then went on to Velcade. So I do understand you being fed up.
21 months down the line,and one SCT on the way,been to France and on a cruise and hope to do New Zealand for Christmas,This is the time for you to be strong,tell him he can do it.
Steroids mask infections if you have a blood pressure machine it is a good way of telling his condition,worth investing,you do have to keep your eyes on them,as they do not realise some times that they are getting confused,so check,temp,blood pressure every day if they do not seem themselves.Eve

[eveParticipant]

Hi Cathy
Nice to know Ivan is on the mend,time for you to take a rest before the hard work begins at home.
It is hard for them to eat and drink,there taste buds are non exsistance,takes a long time for the gut and bowels to regain any order even months after Slim is occasionally sick and bowels controlled with powders,its so easy to get blocked up.

When they first come home it is very hard,make sure you keep people away,Slim went back in twice with problems and he was attending hospital twice a week for blood test so it felt if we never left.Plus all the work clean towels and extra cleaning,cooking small meals only to be left,found buying small pots of custard and cake,and snack food helped.

So rest now why your have the chance.Eve

[eveParticipant]

Hi Ann
swollen ankles and numbness are some of the symptoms,both will go with time.
You can buy socks that have more give at the top to make it easier to get them on,he needs to keep his feet elevated when sitting,i use to use coco butter milk from boots and massage Slims feet it does help with the feet being swollen.Helps circulation .
Eve

[eveParticipant]

Hi Sarah and Henry
It is nice just to have that result from the BMB,so we know how you felt,here is were you start doing all the things that you keep putting off,have those holidays,and days out,and just enjoy your second chance.

Live your life,for all those people who are fighting this disease,enjoy it to the full.Love Eve and Slim.

[eveParticipant]

Hi Min

This little one will be for my daughter,her thoughts are never far away,from Matty,she is strong,but at times finds she is over whelmed,It is usually when she does not expect it. Thanks again Eve

[eveParticipant]

Hi Dai and David

Yes Dai you are right,I am impatient,it just seems to go on for ever.

David this maintenance treatment is part of the Myeloma X1 trials,after SCT you are randomised for revlimid or Zolinza,or not treatment,Slim got no treatment.

How are things going with you???? Love Eve

[eveParticipant]

Hi Keith
Good to hear you are feeling better after the large doses of Dex,Slim never had massive doses of Dex,in fact after the pneumonia,they reduced it to 20ml a day on a four day cycle on the trials,so weight loss on heavy steroids still seems iffy.

Slims in remission,and on trials is now receiving no treatment,would love to say he,s great,but has some bad days of sickness,and bowel problems,so gains weight and looses it just as quickly.

I think I might just have been expecting a better outcome once he had SCT, I sound ungrateful,hoping it all improves.Love Eve

[eveParticipant]

Hi Mari and Steve

Soon be all over Mari,but take it easy that journey alone is a horrible one,I was so tired just going up and down all those steps at the station was awful.

Slim had a driver for meds,could not keep anything down,even now he will not touch stuff he was sick on,cold milk and ice cream seemed to help.I just stocked the fridge with little pots of custards yoghurt and rice puddings,they were very good at the hospital,always left food just in case he could get anything down.Still has problems with eating,not like Slim at all,nurses point of view,no point eating if it makes you sick,just fluids.

They have a supplement that is a mouthful only which is 100 cal a time,they call it shots,if you can get them down him it will build him up.Dietician supplies them.

I took I Pad in for Slim,so he was able to Skype and do Face time,not that he felt like it,but eased the girls mind,when the could get him to reply.

Also got physo to get him a small peddle machine in room,a few minutes excises to help his legs,never got to the gym but gave him routine.worth doing if he has to be in longer.

Slim also enjoyed the frothy coffee,s from the food place I use to get one for him on the way up.I also took some packets of them in,plus hot chocolate,and soups.

Good luck Mari,take it easy,I also got someone in to clean just 2 hrs,kept her on,she comes in and gives kitchen and bathroom a good clean,keeps me on top of things.worth every penny. Love Eve

[eveParticipant]

Hi Mari

I f I am correct that is a few floors up,turn left out of lift and walk down and it is on your left 2 wards through one door.!!!not very good views from windows,but bigger rooms,and from what I remember they would even do cheese on toast,bigger kitchen.It is roughly half a mile all together from Denmark Hill station.Slim was in there the first time ,Waddington second time.

Will be there with Slim on the 3 of October,

I suppose you are working and visiting of an evening,it must be hard work,you make sure you get some rest,the hard part is Steve coming home.
Good luck to you both,you will be smelling the sweeetcorn by now lol.Eve

[eveParticipant]

Hi Pat
AL is similar,it is rarer,I think 600 cases a year,last time I looked and only one hospital Royal Free,there are a few people on here with both Amyloyds plus MM,they usually pop up in related conditions.

It is not knowing that causes sleepless nights,so once you do know you feel you have something to fight,Velcade works for MM.

Its good to know some good things come out of bad things,so good to have a caring friend,I wish you well on your journey .Eve

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